Participation in Action: Young heroes give advice on transitions to adult services
Adam Offord
Monday, June 6, 2016
Young people with life-limiting and life-threatening conditions are developing resources to help ease the transition between children's and adults' services.
Provider Together for Short Lives
Name Transition Taskforce Young Avengers Group
Young people with life-limiting and life-threatening conditions and their families often find the transition process from children's into adults' services very difficult.
Medical advances mean more young people with life-shortening conditions are living into adulthood, but the transition they undergo from the comprehensive care offered by children's palliative care to unfamiliar adult services can be daunting and is often not joined up.
Together for Short Lives established a UK-wide Transition Taskforce in 2013 to develop a co-ordinated approach on how best to plan and deliver local care and support for young people with life-limiting or life-threatening conditions as they make the transition.
This group is made up of a range of individuals from a variety of professional backgrounds, sectors and provider organisations across the UK. It is also assisted by a group of young people known as the Young Avengers Group, which was named by the charity's first young ambassador Greg Wilford, who died in 2014.
Lizzie Chambers, director of development at Together for Short Lives, says the charity has been working to improve the transition process for some time. But thanks to funding from the Department of Health, it is now able to "build bridges" between children's and adults' services.
"We very much recognise young people should be at the centre of the taskforce, so from day one we had a work team in there that is focused on enabling young people to have a voice in our work," she says.
Chambers explains that the project aims to utilise the different strengths young people have. For example, those interested in writing have helped the charity to develop a range of resources and guidance on topics such as accessing personal budgets and using assisted technology. Other young people prefer to express their views by speaking at events, she says.
Much of the work by the Young Avengers is done through an advisory group which enables them to share views, comments and influence resources and priorities for action in the charity's local, regional and national work.
Some of the young people in the group not only get involved on a national level, but also at a more local level in young people's regional forums to ensure there are links between local, regional and national work.
Chambers says there are a number of ways young people with life-limiting and life-threatening conditions can join the Young Avengers. They can either take part by going through their local group or by contacting the charity.
She says that at the moment there are 14 young people on the national group, with some having been diagnosed with conditions from birth such as spinal muscular atrophy or genetic conditions, while others may have been diagnosed with conditions later in life such as cancer.
"It's quite a small group, but obviously the nature of the young people we are working with means that we do often lose them along the way, so we have a fairly steady number of about 14. We span the 14 to 25 age range, but most of our young avengers are over 18 so have been through transition.
"They are very self-select and they are keen to play a very active role and that is what matters."
Chambers says transitioning to adult services has increased the confidence of many avengers and where they have been successful, they are keen to mentor young people not yet at that stage of the process.
Together for Short Lives ambassador Lucy Watts, aged 22, is among the young people helping the charity. She says: "My charity work keeps me going, gives me a way to contribute to society and feel useful, and is a positive focus away from all the negatives of my conditions."
Chambers says the charity also has plans to launch a new transition guide for young people and to develop a new website with a dedicated section for young people.
She also believes one challenge the charity has to face is to build up the number of young people who want to engage locally with service providers.
To get involved in the Young Avengers Group, contact transition@togetherforshortlives.org.uk